Son not taking Delzicol. Suggestions on what to do please?

[Jake's_mom♡]

Hi,

I am new to this forum. I was inspired to register today after reading the post by crohn'smakesmeangry. My son was diagnosed with crohn's last year , 3 months before he turned 14. They started him off on methotrexate inj once a week and asacol, which was chaned to delzicol when it was discontinued. Have had the same issue with my son not taking delzicol as presribed. Did the pill box , he would misplace it , or I would notice the pills weren't taken. He would tell me he took them from the bottle instead. I would also hand him his pills , only to find them later on the coffee table or floor. Now I hand them to him and witness him taking them. He was doing well @ his check up this February. He looked and felt good and his inflammation level was zero. He was on methotrexate inj , had him down to 6mls once a week. Also taking delzicol as prescribed. We were also introducing some of the scd diet and he was eating lots of organic veggies and fruit. No bread , sugar , or processed foods. His doc was amazed that he was doing so well on minimum meds. So she decided to change his methotrexate inj to pills. He just had a follow up 2 weeks ago. Since his appointment in February he had started not taking his delzicol and was not eating a good diet. So at the recent follow up he had lost weight did not look or feel good , inflammation level was up. His doc wanted to do a colonoscopy and egd that week. I asked her to give us time time to get back on track. To get his weight up and inflammation level down. Sorry I'm going on and on. Just feel really lost , almost feel consumed with worry and stress. So she gave us 30 days to get him back on track. She told us to do whatever we were doing in February because it was working. Which was taking meds as prescribed and diet. But also he was on the methotrexate inj instead of the pills. I'm guessing it was a combo of not taking the delzicol properly, not eating well , and possibly the change to methotrexate pills. When he was first diagnosed she said the inj was more effective. Most of my son's disease is in his terminal ileum , and from what I've read the pill form is not absorbed as well because of inflammation in that area. I just want him to be doing well again. I'm afraid if he isn't better atthe end of the 30 days , his doc will insist he go on 6 mp. She has been pushing for him to go this med from day one. I have strongly resisted this option for more son given the fact there is an increased risk for a fatal liver cancer among teenaged boys. Anyways I do hope both our boys are better soon. Take care.

 

[malorymug]

Why does your son not take the pills?

 

[Clash]

That age can be difficult. My son was dx'ed around 15. It was originally a struggle to take the meds. He was on mtx pills and last summer just stopped taking them for a month. It wasn't the end of the world for him but his disease is mostly silently active.

I assume it was a bit of rebellion as now I don't have any issues with him taking the meds. At this time he is only on mtx injections.

 

[Jake's_mom♡]

Not sure why. I guess maybe being a somewhat difiant teenager ? Possibly in denial with how serious this disease can be ? His pediatric gastroenterologist did say at his last appointment that quite a few of her teenage patients are non - compliant with their meds. She did suggest he try Lialda instead of the Delzicol. Lialda is taken twice a day , instead of the three times a day for Delzicol , since he mainly misses the afternoon dose. The Lialda after my insurance was $167.00 for 1 months worth , Delzicol is $80.00. I'm a single mom and with all the other expenses we have I have decided to give Delzicol another chance with my son taking it as prescribed. I have tried explaining all of this to him , I hope it sinks in.

 

[Maya142]

Hi and welcome!

I also have a difficult teenager - my daughter is 17 and was diagnosed at 16. In the past, what has worked is having her doctor explain why taking that particular medication is important. It doesn't always work (right now she is completely refusing hydrocortisone enemas) but it's worth trying. In the past, taking away privileges (tv or computer), bribery and talking to her rationally have also worked. My daughter also sees a psychologist which has been very helpful.

Could your son's GI put him back on the Methotrexate injection, since that was working?
Or would a round of steroids be an option just to get the inflammation under control?
Good luck!

 

[malorymug]

Ugh. I didn't realize it was 3 times a day. I was the queen of non compliance with any meds that was 3times a day until we were diagnosed. Our ped GI scared us into complete compliance, but we are on 6mp and just once a day. And still newly diagnosed so we are still in honeymoon phase.

 

[Jmrogers4]

Welcome from another Idaho mom. My son just turned 15 last Thursday. We did the oral methotrexate, it worked well to control the disease in our case but he had another reaction to it and couldn't continue on. He was also on the 3x's day dose of Pentasa which was a pain because like your son he would skip/forget. Our big compliance issue was with supplemental nutrition. He would lie and say he drank it, we would find full unopened ones in the trash. I would get so angry as he was so underweight they were concerned about his organs.
I talked to a child psychologist friend of mine and she explained it this way. We see the big picture and how it going to help, they live in the here and now and if it directly effects them at that moment it's a big deal. For example if they are feeling bad they take their medicine but if they are feeling well they think they don't need it because they are feeling well. - make sense? It's a constant lesson of you feel well because of the medicine and if you want to continue to feel well then you need to take your medicine. She also said I needed to work with him and tell him it wasn't optional but still give him some control for example with his drinks he had to drink 8 of them a day and I told him, you must drink 8 a day but how and when you do it is up to you because it needs to work for you. Once he took control of it we had less problems. There was still the "I forgot" after all he's a teenage boy.
We've done the Imuran route (sister drug of 6MP), all the drugs have their scary possible side effect. The risk of the cancer is really very small. There is a cancer risk for untreated or undertreated crohn's as well. The most important thing is to keep the inflammation under control. My son is now on remicade which I was terrified of, why? I think because it meant admitting that his disease was worse then I thought but know that he is in remission and growing and gaining weight and we go weeks without necessarily thinking about crohn's until it is time for his infusion. Now I just want it to keep working forever.

 

[rygon]

Sorry but I cannot find the video I am looking for ( I think it was youtube channel Big Think)

So I digress, I haven't tried it out but it seemed a good way to change someone's opinion.

On a scale of 1-10 how willing are you to take the medicine (1 being not, 10 being all the time)

if they score more than 2 then ask them why did they not say lower? this should make them come out with reasons on why they should take it (save life, better life, less pain, etc). This should help them come up with reason why they should take it on there own rather than someone else telling them.

If they score a 1, ask what would it take to get them to rate it higher? This may mean a compromise of some kind.

Try and get them talking 80% of the time, and ask them leading questions (something that takes a sentence to answer and not just yes or no)